http://www.bellybelly.com.au/forums/ Does your baby or child have a special need or disability? Share your experiences, challenges and triumphs here. en Sat, 21 Nov 2009 22:01:47 GMT vBulletin 60 http://www.bellybelly.com.au/forums/images/bellybelly2/misc/rss.jpg http://www.bellybelly.com.au/forums/ http://www.bellybelly.com.au/forums/babies-children-special-needs-disabilities/117246-robinow-syndrome.html Thu, 19 Nov 2009 07:05:35 GMT My son has just been diagnosed with Dominant Robinow syndrome. It is a very rare genetic disorder and finding it hard to find a support group etc. Does anyone have a child with this syndrome? My son has just been diagnosed with Dominant Robinow syndrome. It is a very rare genetic disorder and finding it hard to find a support group etc. Does anyone have a child with this syndrome? ]]> Belle with the bump http://www.bellybelly.com.au/forums/babies-children-special-needs-disabilities/117246-robinow-syndrome.html http://www.bellybelly.com.au/forums/babies-children-special-needs-disabilities/117170-alpha-1-anti-trypsin-deficiency.html Wed, 18 Nov 2009 11:15:51 GMT I've been told my beautiful baby boy has Alpha 1 Anti Trypsin deficiency which is a genetic disorder (not sure which side it's come from). He's had stacks of blood tests, and have been told the latest one will be at least another 5 weeks. It's been sent off to a specialist at another hospital, who has forwarded it on to someone else. I haven't been told too much by the doctors and am starting to get worried.

I've read up about it on the internet, and while it can be not too much of a problem, it also appears that it can be quite serious. The longer it gets dragged out, and passed around, the more concerned I'm getting.

Just wondering if anyone else has had a baby (or knows anyone) with this diagnosis, and how they're going and how you cope/d? ]]> kymmie http://www.bellybelly.com.au/forums/babies-children-special-needs-disabilities/117170-alpha-1-anti-trypsin-deficiency.html http://www.bellybelly.com.au/forums/babies-children-special-needs-disabilities/116869-so-confused-about-aspergers.html Mon, 16 Nov 2009 01:28:25 GMT Hi all,

I am writing this today in pure frustration and at the point of tears. My DS1 is 6 and we have thought for a while that he has had some funny quirks..

When he was at Kindy i spoke to the staff and they said perhaps we should look at getting him assessed for Aspergers. At first my world fell apart, i wondered why my little boy and then i thought about how he reacted around his peers and wondered how can I help him see the world isn't so scary..

Ok anyway to today.. I again brought up my concerns at his 5 yr old health check and was told he is very smart, he is talking to me etc nah i think he is fine... Then another nurse later that yr says to me hmm i think he may be on the lower end of the scale.
I then went to the Drs with my DD and took DS along, the DR actually asked me if he had autism etc due to the way he was playing but again it was left at that. I went back to DS dr who said he is too social, ask his teacher what she thinks so i did... She says to me no he is too social.. to vocal
So once again i leave it thinking well maybe he hasn't... Then this week it begins again, a trip to the dentist reveals he has ground the back of his teeth away, he received two detentions in two days, he refuses to make eye contact and actually cries when forced to.. and then he says a boy tricked him to climb into the urinal at school and kiss it..... He knows that kissing it will make him sick, he knows it is wrong but he cant understand why he did it.. I cant get through to him that this person who told him to do this is not a good friend.

I had a group of friends over on Friday who work with special needs children at kindergartens here... I was talking about Hamish at school and his behavior again and they turn to me and say you need to get him assessed.. One of these has known Hamish from a baby..

I am so confused and don't know where to go from here.. I feel like i have let my little man down ]]> tan32 http://www.bellybelly.com.au/forums/babies-children-special-needs-disabilities/116869-so-confused-about-aspergers.html http://www.bellybelly.com.au/forums/babies-children-special-needs-disabilities/116179-question-re-autism-teeth-grinding.html Sun, 08 Nov 2009 13:51:44 GMT My dd is 9 months and after doing too much googling (darn google!)about hand flapping and teething grinding (which she does) im now concerned she be somewhere on the spectrum? am i being OTT :redface: My dd is 9 months and after doing too much googling (darn google!)about hand flapping and teething grinding (which she does) im now concerned she be somewhere on the spectrum?

am i being OTT :redface: ]]> Cookalooks http://www.bellybelly.com.au/forums/babies-children-special-needs-disabilities/116179-question-re-autism-teeth-grinding.html http://www.bellybelly.com.au/forums/babies-children-special-needs-disabilities/116076-what-available-australia-kids-cerebral-palsy.html Sat, 07 Nov 2009 05:37:33 GMT Hi Everyone,
I am an long time member of BB but haven't been around in ages. I've just learnt that my niece born 10 weeks premature on 12 Feb 2009 in London is likely to have cerebral palsy, probably with epilepsy and intellectual disability. My brother and SIL are still in London and have been having a really tough time trying to get any social or medical support there.

At 10 months old (7.5months corrected), neither GPs or Paeds in London seem able to diagnose any problem nor do they seem willing to do any kind of intervention. It is apparently not even contemplated until the child is 2.

My SIL is Russian and recently spent a month in Moscow where the medical fraternity have a completely different approach and are much more into early intervention. She came back to London and immediately made an appointment with a neurologist who has just diagnosed the CP and has ordered a raft of other tests (to make sure it is not something else genetic or prorgressive) and a MRI for next week.

I would love to hear from any mums in Australia about your experiences with treatment and support for CP. My brother is willing to move anywhere in the world to get the best treatment for his daughter. We would like him to return to Australia so we can support him and his girls.

So can you help?

If you can answer the following kinds of questions I would be eternally grateful.

1. What town/city and state do you live in?

2. When was your child first diagnosed?

3. What kind of tests were carried out? when?

4. what kind of treatment/medication/support do you get for your child?

5. Is it covered by medicare or for free or do you have to pay? Or is it covered by private health insurance?

6. How would you rate the medical services you have available to you?

7. Are there any places/clinics/physicians that you would recommend?

8. Can you please PM me to get my email address if you need to tell me about a physician/place to avoid (i.e don't slander anyone in response to this thread).

9. What about other support services?

10. How important has having a parent or other close family around been to helping you with your child?

11. Is there anything else you can advise me about the system in Australia with respect to CP that might help my brother decide whether he should return to Australia or stay in the UK?

12. Do you know any other BB members I can approach who might be able to help me out here?

thanks in advance

Kar ]]> Kar http://www.bellybelly.com.au/forums/babies-children-special-needs-disabilities/116076-what-available-australia-kids-cerebral-palsy.html http://www.bellybelly.com.au/forums/babies-children-special-needs-disabilities/114753-question-about-aspergers.html Sat, 24 Oct 2009 00:27:03 GMT well im hoping some of you lovely ladies can help me.

there is a boy on my DS's little athletics team who has aspergers, i am team manager for a few weeks.

now a few questions,

how can i help this boy feel involved and part of the team?
how can i encourage him to do his best?
does praise work?
his mother has told me the long races arent good and he gets very upset by them, so i just asked him if he wanted to do it and helped him run the 800m last night.
but i want this boy to enjoy the experience of little athletics as much as he can and i want to make sure im helping him as much as i can..


thank you so much in advance ]]> kawazuki http://www.bellybelly.com.au/forums/babies-children-special-needs-disabilities/114753-question-about-aspergers.html